How I’m Staying on Top of MS’ Many ‘Gifts’

When I was finally diagnosed with multiple sclerosis in 2009, my first question to my neurologist was, “Will I end up in a wheelchair?”

She patted this question back with the generic, “You may, but no one knows the course that anyone’s MS might take.”

Later, I learned that late-onset MS tends to be more aggressive than other forms. I was 49 when I was diagnosed. Still, this research came later.

What I wasn’t told then, and haven’t been told much since, are details of the ancillary problems that MS throws at us. In nearly four years as a patient columnist, I’ve written about them all. But this week, I seem to be on top of them.

Let’s see, shall we?

Urology

I started using catheters in January 2011, after I had a horrendous time while staying at a friend’s house.

OK, a lot of wine might have been drunk. But I spent the night in the bathroom with agonizing dribbles. My wife drove us home the next morning while I sat in the back of the car using an improvised wee bottle. I believe it was some kind of plastic food container.

A year later, I was carted off to my local hospital with a urinary tract infection (UTI). I had a high fever and couldn’t move. I had no idea what was happening. We live in London, but my wife was in South Wales, visiting her terminally ill auntie, and my eldest son was at work. He had to come home to let the ambulance in.

Of course, UTIs are commonplace with self-catheterization, as there are many chances to introduce infections into the bladder. But no one had told me. Strict hygiene then followed, which made some difference until my recent disease-modifying therapies, alemtuzumab and ocrelizumab, ganged up to destroy my immune system. This left me with a biofilm in my bladder. 

Thankfully, I’ve since found a urologist who accepts what’s happening and has prescribed a treatment for it: antibiotic nitrofurantoin at double the regular prophylactic dose. When I have an exacerbation (that’s a UTI, folks), I revert to the full antibiotic dose. My last one lasted a month.

Prior to this, I went through every test my local hospital’s urologist could throw at me, only to be told I had a clear bladder, and to be complimented on my catheter technique.

Luckily, I was happy to go off-piste at this point. This took me to the world of phage therapy, and then, thanks to a very clued-in urology nurse, to my present regimen. It is the first time in years that I’ve actually been in control of my UTI situation.

And before I finish, MS also affects the bottom. I was introduced to the world of anal catheters by my wonderful local MS nurse just over a year ago. It’s taken some time to adjust to them, but in the last few weeks, my life (and my family’s) sure has gotten a lot easier.

Trigeminal neuralgia

This neuropathic nerve pain, which usually occurs in the mouth and face, can affect anybody, but it is more prevalent among the MS clan. It first smacked me down about two and a half years ago. Again, I had no idea what it was. I thought trigeminal neuralgia had won last December, but I seem to have found an answer for now.

It is even more debilitating than being in a wheelchair.

Lymphedema

This swelling in my lower limbs started when I was walking, swimming, and playing wheelchair tennis. When I was forced into a wheelchair, it went gangbusters. It turns out that most lymphedema clinics in the U.K. are aimed at cancer patients. But guess who made a fuss and got into one?

The clinic staff told me they think MS causes lymphedema. A column I wrote about edema received a high number of responses, which indicates I may have struck a tubby nerve.

I experience other issues, such as my neuropathic right arm. But a reaction like this is hardly a surprise with MS. The upside is that some of the medications I’m taking for trigeminal neuralgia also work for my arm. Boy, has that arm quietened down!

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